Fistulizing Crohns, possible resection soon

[livefree03]

Hello, new to the Forum, Just looking for some insight from a Crohns patient similar to me.

I was diagnosed with Fistulizing Crohns Disease after 3 years of surgery and hospitalizations. No family history. I will skip most of the usual my story type of stuff and get straight to it. I have had 15 surgeries for this disease since 2008 and it appears i will be up for more soon. I am running out of small intestine, not certain what I have left but upcoming scans/tests will tell the story. I have what appears to be fistula activity on my midline, and have so for at least 6 months. My GI team had me on antibiotics, Entyvio, 6mp at one point, and a pill that was fistula focused but none of these treatments are stopping the fistula. Have entirely changed lifestyle since 2011, my family and I grow our own meat, vegetables,eggs, fruit, herbs, nuts etc. Wondering if there are folks out there similiar to me who do about everything right they can but the disease is still overwhelming them? What medicines or biologics are you on/have had most success with? I've tried a large majority of meds/biologics/herbal remedies etc to no avail. Any insight would be great. Thanks in advance

 

[ronroush7]

Welcome. I was diagnosed in 1990. I have a history of fistulas. Cimzia helped for a while but eventually wore out. I am currently on Humira. I don't know if it is working yet. Is Entyvio the only biologics you have tried? Have you done a food diary to see what foods aggravate your system? Please keep us updated on how you are?

 

[livefree03]

Thanks ronroush7, Not certain i have tried cimzia yet. Entyvio not really working. As far as other biologics i've been on remicade, humira and now entyvio. Food diary...yes, kept one for a long time when i first got sick in 2008. Since doing that I have a understanding of what to stay away from and what to eat. It helped. Looking for folks that can deepen my understanding from the patient perspective of what may be coming my way when/if my crohns takes me to that road when i have no instestines left. Pretty close to that point and trying to prepare/do what i can to pump the brakes on it.

 

[ronroush7]

I hope you can get relief soon.

 

[caretothepeople]

Sorry to hear you have been through so much, livefree03. It sounds like you are still optimistic even in the face of that. It's amazing that you have been able to make positive changes for yourself and your family.

This disease can be very challenging and the emotional/mental toll can be big, and overwhelming at times like you say. Working with a therapist, counselor, or attending a focus group can sometimes help. It can be a relief to be around other people who "get" what it's like to live with Crohn's, talk and swap tips and advice. This great here is an excellent one and the community is so active and helpful. In person support groups are an option too. Maybe through the local hospital or CCFA?

 

[If*]

Hello, as off the beaten path as this will sound I really think it helped me with a not as severe situation as what you describe.
I found organic barley green juice helped with a fistula. I know a lot will say no, couldn't be, blah blah blah. But, seriously mine healed and is gone. My CRS mentioned he drinks it too My tissue healed very well. Will it help or fix everyone? I doubt it. Thought it was worth a mention. If not, a great reminder for myself. Please check it out, research a little if you have time.

With intestine loss, and even before, (I think) nutrition should be a much bigger focus of importance then it is currently given. Your efforts are admirable and i do understand the challenge. It can become more difficult with more loss as it becomes tougher to absorb. Certain foods, fats, etc. can almost feel irritating at times. The search for nutrient dense becomes a daily chore.

What about organic coconut oil? Or probiotics? I know they sound small in the situation.

My heart goes out to you. Hope you find something to help.

 

[livefree03]

Thank you all for the tips and words of encouragement, I def appreciate it! Yeah I got into cooking and growing food when i was on TPN for a year back in 2011. Has been a journey with the farm. We practice sustainable farming here. Do no harm to the land, heal it and attempt to heal yourself. Anyhow, yes i'm following with the barley juice....i will research that. We have a plant here where i live called plantaine-broad and narrow leaf. You can make pastes that helps healing a lot of rashes, bites, poisons etc...been thinking of making a paste putting it on some gauze and sticking it to my fistulas to see what it does. Have a few folks i know into herbal remedies and foraging that are always wanting me to try stuff but i often do not. I should try. Most medicines we use are a pharmacutical copy of the natural compounds found on this earth. Except you don't have to buy them. Getting into a rabbit hole there with that statement. I am not much into the groups and counseling, I find mental relief from the anguish outside. To each our own though, thats just the way i get through. Once again thank you guys for the responses.

 

[livefree03]

I'm curious what compound, vitamin or mineral in the barely juice helps with the fistula specifically. got to look that up

 

[Tuff]

My fistulas closed with Remicade. While I was in a long term care hospital dealing with an abscess, my roommate was a woman with a fistula draining from the stomach. She was on total parenteral nutrition (TPN). She came in every night and got TPN while she slept, then went home in the morning. The fistula eventually healed. Hang in there.

 

[If*]

Hi, it is a fine powder of barley green. Health food stores carry it, and online too. To mix I needed a shaker and I used grape juice .The nurse and CRS were both pretty amazed at my healing. Prior to using it if i didn't start to show some serious improvement, I was on my way to having it cored, (whatever that is?) I never found out. Within 10 days things drastically changed. So, my experience was positive.

Check it out, ask your Dr. if it would be OK to try.

Gratitude and peace